--- In clickyhipsclub@yahoogroups.com, "zoetinkler" <zoe@t...> wrote:
> Zoe,
That's such good news. I bet you can't wait to be 'free!' . I too
have read some not so happy stories about relapses, but also so many
positive stories of braces/harnesses working miracles. Your story
gives me hope that the Pavlik may be all that is needed. Fingers
crossed, for both of us and good luck next month at the appointment.
I have to agree that it's the parents who often suffer more. When
Lucie had her first brace fitted she was gurgling and laughing and it
was me who was crying and making a fuss.
I found this group through the STEPS website . I think the Hospitals
need to have more information available. I came out of the hospital
with no leaflet or advice and a baby in a harness. I looked up
everything I know from the net and talking to other parents to get
helpful advice and tips. I guess Lucie needs more tummy time practice
to avoid the nose dives.
Take care
Kirstie







> Hi Kirstie,
>
> Kacey is now 15m, she has made good progress in the brace,(since
> july last year) even I can see the difference in her x-rays!. She
> has another appointment next month and our consultant said last time
> that it was going well and if things continue as they have it is
> likely that she will be "free". Long term does concern me a bit as I
> have read so many stories of kids having op's when older even after
> early treatment but I guess you just have to look on the positive
> side and when the brace comes off i'm sure we will forget our
> worries and celebrate!, live each day as it comes. http://www.steps-
> charity.org.uk/home.php has a great chat forum for ddh if you don't
> know about it, everyone is so nice. Yes we do use Kacey's time out
> for bath etc, she has 30min am to get dressed and play and 30min pm
> for bath, play then pyjamas, and as many squishy cuddles as we can
> get in!.
> I think the only reason Kacey was so active in the Pavlik as she was
> before it was fitted. Lucie sounds quite "normal to me, Kacey
> rolled over at about 5m but done a lot of "nosediving" before that
> and obviously Lucie is still learning as the pavlik had slowed her a
> little but she will find her own way and be chasing you before you
> know it, it's the parents that suffer, the kids are so resilient!
>
> Take care
> Zoe
>
> --- In clickyhipsclub@yahoogroups.com, "kirstieburton"
> <kirstie@t...> wrote:
> >
> > --- In clickyhipsclub@yahoogroups.com, "zoetinkler" <zoe@t...>
> wrote:
> > > Thanks Zoe,
> >
> > How old is your daughter now? and do you know what is likely to
> > happen long term . I guess you just hope and pray for the best ,
> like
> > we do and remain positive.
> > I too just dress Lucie in mostly dresses and some loose trousers.
> > Lucie had a really sore leg when first placed in the harness, the
> > ankle strap was done up too tight, then creased and rubbed her
> shin
> > red raw , She still has the scar now. I check her daily now.
> > From your message I see your daughter was crawling and fast.
> > Could she roll over in the pavlik or did you need to turn her
> over ?
> > The consultant at the hospital said to put Lucie on her tummy, but
> she
> > still just nose dives flat to the floor and doesn't seem to have
> the
> > strength to push herself up. She has been placed on her back since
> > birth, as she was neither rolling or crawling when the harness was
> > applies.Lucie was 5 weeks early, maybe this has slowed her down a
> bit.
> > Has anyone else had this same problem of 'nose diving'?
> > The harness your daughter is in sounds much better and much more
> > practical. I take it you use the 1 hour for a lovely bath and
> stretch.
> > I miss bathing Lucie so much.
> >
> > Good luck to you :)
> >
> > Kirstie
> >
> >
> >
> >
> > > Hi Kirsty,
> > >
> > > My daughter was diagnosed late but was still put in the pavilk
> at
> > > 8m. Because she was crawling before having it fitted she began
> > > crawling again once she was used to it. Our consutltant said
> that a
> > > bit of movement was fine but she had to stop wearing it as she
> was
> > > crawling all day long and keeping up with my 3yr old!. She was
> then
> > > fitted with a brace which covers her back up to her waist & bum
> then
> > > has straps round the legs to hold them in the abducted
> position.
> > > Personally I have found this much better, she had a bad rash
> with
> > > the pavlik and that has cleared up, I mainly put her in dresses
> put
> > > it is possible to fit loose trousers and when it was fitted she
> > > loved it as the bottom of her legs & feet are free, and it is so
> > > easy to fit (she is allowed it off 1hr a day). so all round we
> were
> > > much happier with the brace. If the pavlik is doing the job for
> > > Lucie then it may not be a problem to continue with the pavlik
> but
> > > all consultants have different ways and opinions.
> > > Good luck on the 21st
> > > Zoe